When care collides with cost: an oncologist's dilemma

It isn’t possible to fund every intervention for every patient, and health policy shouldn’t be determined by the news. But individual suffering should force us to ask questions about how our health system works

‘The tired arguments about the billion dollar cost of drug development and drug companies not being charities continue to hamper any meaningful conversation about cost.’
Photograph: Imaginechina/Corbis

Australian Jessica Pereira’s moving plight to find funding for a costly targeted therapy to treat her rare lymphoma surfaced simultaneously as former President Jimmy Carter rejoiced that there was no sign of the melanoma that had spread to his liver and brain, thanks to another blockbuster immunotherapy.

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The juxtaposition was ironic. A newly married woman faces the existential question of why she must die at age 26 while a 91-year-old man is back teaching Sunday school, casually explaining that he missed the last few lessons because doctors needed to remove part of his liver.

I was pleased for President Carter and could well picture his oncologist’s gratification. After all, it’s not everyday that insistent tumours melt away under treatment. But I identified more strongly with Pereira’s oncologist because the hardships patients face in obtaining treatment is a constant thorn in the side of every oncologist.

The drug Pereira needs is subsidised in Australia but for an uncommon subtype of lung cancer; her argument is that if a monthly supply costs an eligible lung cancer patient just $37 per month she should not be forced to pay $7,500. This drug is promisingly effective but not curative.

Don’t get me wrong: if young Jessica were my patient, I would be arguing her case even in my sleep. But if you then asked how I proposed to offer sequential blockbuster therapies, with variable but mostly a small chance of success, costing tens of thousands of dollars per patient per year, I couldn’t give you a ready answer except to say that the dilemma is increasingly pressing on the minds of oncologists, as it ought.

How to ascribe monetary value to a life? When to adamantly insist on coverage for one drug but merely desire another? How to balance clinical efficacy with cost-effectiveness when the patient pleads you should spare no cost in saving her life?

New cancer therapies are exorbitantly priced and compassionate access is nigh impossible unless the company expects eventual government subsidisation, in which case a period of free access is a very small price to pay for establishing market familiarity and reap rich returns.

We need governments to exert their influence on behalf of all patients to tackle the prohibitive cost of new drugs.

High-prescribing oncologists or so-called key opinion leaders may secure free access for their patients but most patients are told to cost-share or self-fund. The vast majority of patients deem both options unaffordable but the tired arguments about the billion dollar cost of drug development and drug companies not being charities continue to hamper any meaningful conversation about cost. It’s notable that the pharmaceutical industry has outperformed the market so far in 2015. The S&P Pharmaceuticals Select Industry index grew 13.37% versus 4.16% for the S&P 500.

Individual oncologists bargaining with big pharma to serve select, usually affluent patients, is never going to lead to systemic change. For this, we need governments to exert their sizeable influence on behalf of all patients to tackle the prohibitive cost of new drugs.

Doctors recognise the intellectual argument that healthcare cannot be endlessly funded but in a highly sub-specialised system, each doctor ends up advocating on behalf of a narrow subset of patients.

This came into sharp focus when I treated an elderly non-cancer patient with recurrent falls admitted to my medicine unit. Thousands of dollars of tests later, a thorough history revealed that the reason for his falls was blindness from bilateral cataracts.

I was alarmed to find that he dialled his insulin dose via guesswork and he couldn’t even count the fingers held in front of his face. He had spent the year on the cataract surgery waitlist. After a whole month in hospital sorting out peripheral matters, I asked whether he would consider residential care because I could not let him go home alone. He looked calmly in my direction but his voice shook, “If you place me, I will kill myself. If you really want to help, fix my cataracts.”

Cataract surgery, timely hip replacement, suicide prevention and community rehabilitation make a profound, even transformative, difference to patients’ lives but those who need them are hardly the public face of suffering. Moreover, such patients lack vocal advocates.

Did you hear about the frail widow who was glad she broke her hip because it finally moved her up the orthopaedic waiting list? Or the man who lived in a wheelchair because he wasn’t weak enough to qualify for inpatient rehab but wasn’t strong enough to get to an outpatient facility? I looked after them both – they didn’t make me feel any less committed to my cancer patients but they provided an object lesson in perspective about healthcare funding.

Not so long ago, senior clinicians proudly proclaimed that their only responsibility was to care for the individual patient irrespective of societal cost. While this attitude will never vanish, modern doctors are increasingly coming to grips with the fact that one patient’s expensive hepatitis or cancer therapy inevitably comes at the cost of another’s HIV drugs, wound management or dementia care.

Entire conferences are dedicated to the ethics of sustainable healthcare and debating how to get the balance right. But the hardest part is learning how to articulate these notions to patients without fostering doubt and extinguishing hope.

With no uniform policy, absent training, and no community appetite, doctors are understandably reluctant to broach the cost of profligate medicine with their colleagues, let alone patients. Yet I don’t think this is evading responsibility as much as feeling uncertain about just how to practice fiscal responsibility while being the healers we set out to be.

Thoughtful doctors know that if we don’t rise to the challenge, we will eventually be faced with the greater challenge of disappointing more and more patients. It is neither appropriate nor feasible to fund every intervention for every patient.

Rare Cancers Australia estimates that of the 44,000 patients diagnosed each year with less common or rare cancers, more than half will succumb to their illness. Cancers of the lung, breast, prostate, colon and melanoma attract the lion’s share of attention due to their larger numbers and effective lobby groups, but this is an indictment of a healthcare system, which should cast a wider net of help.

The Cancer Drugs Fund in the UK sets aside £340m per year to pay for drugs that are not covered by the NHS for reasons of efficacy or cost but which may still be considered on an individual basis. The fund is typically accessed for treatment of rare cancers and the independent panel has a rapid turnaround time of 10 days. Canada is considering a reimbursement pathway for all rare diseases. Australia should regard these policies with interest.

It’s worth remembering that for every news story that tugs at the heart strings, there are countless other patients who suffer silently, hoping that society will not ignore them. Healthcare policy can’t be determined through newspapers and sound bites because of the very real implications it has for every single one of us.

The true measure of a society can be found in how it treats its weakest and most vulnerable. Hospitals and medical clinics are filled with such people. It’s time for bold leadership and candid conversation to foster a system that actually delivers what it claims – health and care, with compassion, fairness and ethics at its core.